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Home > Vitafriendspku > Your pku journey > What Factors Affect Phe Levels? (Children)

What Factors Affect Phe Levels? (Children)

Introduction
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There are many different factors that can affect phe levels. Your dietitian will be able to give you guidance on these, so you will know what to expect. They can include things like your child being unwell, not eating enough, and refusing to take their protein substitute.

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My child is unwell
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It is normal for children to suffer with common childhood illnesses like coughs, colds or high temperatures. If your child is poorly, make sure they stay hydrated and take in enough energy (calories), so they have the energy to fight the illness. If your child doesn’t eat enough energy (calories), then like everyone, their bodies will break down the protein stores from their muscles to use for energy. This means amino acids, including phe, will be released into the bloodstream and blood phe levels will increase. It is important to contact your GP and dietitian for advice.

If your child must take medication when they are ill, remember, some medications contain aspartame, which is a source of phe, and these must be avoided (unless your doctor tells you otherwise). Always check the ingredients of medications with your dietitian or pharmacist.

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My Child Is Not Eating Enough
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As well as making sure your child manages to meet their daily protein needs from their protein substitute and phe exchanges, it’s important that enough energy (calories) is also taken in to meet their activity levels. If not, then like everyone, the body breaks down its protein stores from the muscles to use for energy. This means their blood phe levels will increase.

Eating a varied and balanced diet that contains exchange-free foods like permitted fruits and vegetables, low protein specially manufactured foods, phe exchanges and their protein substitute, as well as some fats and sugar, will help your child meet their daily energy (calorie) needs.

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My Child Is Cheating
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Cheating is when your child is deliberately eating more or less phe exchanges than they are advised by their dietitian each day. This can affect blood phe levels. See our help and advice with cheating.

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My Child Is Refusing To Take Their Protein Substitute
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If your child is not taking their protein substitute, talk to them and ask why. If it is because they dislike their current protein substitute, speak to your child’s dietitian and ask if there are alternatives to try. This way, your child can feel some control in choosing what protein substitute they will carry on taking.

Whilst waiting to try or receive a new protein substitute, explain to your child why they must continue to take their current protein substitute in the meantime. Perhaps you could go over what a protein substitute is and its importance, in case they have forgotten. Explain to your child that their concentration in school and ability to do their schoolwork may be affected if they do not take it. If they take part in sports, letting them know their energy levels and performance may suffer could encourage them to make sure they take their protein substitute.

It could be that they are feeling self-conscious taking their protein substitute in front of their school friends. If this is the case, contact the school and arrange for your child to be able to take it in private – maybe in the school office away from other pupils. If your child agrees, it could be useful to ask the teacher to explain to the class why it is important that your child takes their protein substitute.

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